“VAW and HIV treatment, care and support: the unspoken barrier”

1. “VAW and HIV treatment, care and support: the unspoken barrier” Belinda A. Tima and Fiona Hale Salamander Trust Associates www.salamandertrust.net

2. Intersections • Violence against women (VAW) is a known factor in vulnerability to HIV infection. • There is less analysis of how VAW, and the fear of violence, also affects women’s ability to access HIV testing, treatment, care and support. • Initiatives to increase treatment access, such as the 3 by 5, the G8 declaration of 2005 and the UNGASS high-level meeting of 2006 on “universal access by 2010”, and HIV programming generally, have not sufficiently taken violence against women into account. Salamander Trust Associates, www.salamandertrust.net

3. VAW as a barrier to HIV care, treatment and support VAW as a factor increasing women’s vulnerability to HIV infection, and as a barrier to HIV prevention and testing, has been discussed in previous fora. This presentation will focus in on one aspect of VAW in its intersection with HIV: VAW as a barrier to accessing HIV treatment, care and support. Salamander Trust Associates, www.salamandertrust.net

4. VAW as a barrier to HIV care, treatment and support We will cover: • VAW as a consequence of disclosure of HIV status. • VAW as barrier to travel to sites of HIV care, treatment and support. • VAW as barrier to accessing appropriate and supportive counselling, care, treatment and support services (including HIV, OI, other health, legal, economic and psychological services among others) • VAW as a barrier to facilitating environments for getting, keeping and adhering to ARVs. Salamander Trust Associates, www.salamandertrust.net

5. Different intersections in different circumstances • Women living in conflict zones • Women who are in camps for people who are displaced by conflict • Women in prison • Asylum seekers, refugees and migrant women • Sex workers • Women who use drugs and alcohol • Lesbian, gay, bisexual and transgender women • Disabled women • Indigenous and multistate women (such as Roma women) • Young women and girls • Married women • Pregnant women • Widows Salamander Trust Associates, www.salamandertrust.net

6. VAW and disclosure • Disclosure is know to be a trigger for VAW. • ACTS (access to care, treatment and support) requires a supportive environment. • Research shows that domestic violence prevents access to health care and women’s ability to take HIV medication consistently. Abused women reluctant to keep appointments if they were afraid of their partners, depressed, or ashamed of being abused. Partners sabotaged women’s efforts to seek care. (Lichtenstein, 2006). Salamander Trust Associates, www.salamandertrust.net

7. Getting to sites of HIV treatment, care and support Collecting ARVs from a clinic is something women must do every couple of months (forever), and sometimes more frequently (every couple of weeks if they have children). This means that on a regular basis women must: • Travel what is often a long distance, often in difficult circumstances. • Find the time / excuse / childcare / money for the trip. • Face the often negative attitudes of health workers and other patients. • Risk in situations of conflict, political unrest or generalised violence. Salamander Trust Associates, www.salamandertrust.net

8. Getting to sites of HIV treatment, care and support • Women unable because of injury or threat to get to treatment sites. • Women unable to pay travel costs, or partner refuses to pay (financial violence) • Women don’t want others to see the visible signs of violence so don’t go to treatment sites. • Women concerned they will be “told off” for missing doses due to violence, so stay away from services. • Women risk sexual violence when travelling to services. Salamander Trust Associates, www.salamandertrust.net

9. ARVs and non-disclosure For women whose partners do not know their HIV status, violence or the fear of violence means that ARVs must be kept hidden: “I am still on medicines but my husband does not know. I am only managing because I hide medicine. I dig in the ground, put medicine in a tin, and put it in a hole then put the water bucket over it...” Lucia G. (Human Rights Watch, 2007) In conflict environments where there is often overcrowding, and for people on the move, there is no room to store or hide HIV medication. Salamander Trust Associates, www.salamandertrust.net

10. ARVs and disclosure Partner confiscating ARVs to punish woman: When a husband or partner does know the woman’s HIV status, ARVs can become used as another weapon against her: • “Every time they quarrelled her husband would beat her up and take her drugs and throw them away” (Human Rights Watch, 2007) • “Once my husband threw away my medication into the pit latrine.” Charity T (Human Rights Watch, 2007) Salamander Trust Associates, www.salamandertrust.net

11. ARVs and disclosure (cont) Partner forcing woman to share ARVs with him: • ‘Most of us as women living with HIV and who are using ARVs, we face a common problem that our husbands or partners tend to force us to give them our ARVs dose while he has not tested for HIV and doesn’t know his CD4 counts. They do not want to go for testing while they show all HIV symptoms. Even if you refuse he will find where you keep your medicine and steal them.’ HIV positive woman, Tanzania (ICW ACTS Mapping, 2006) • ‘fighting with my husband or even chasing me out of the house when I refuse giving him my dose.’ HIV positive woman, Tanzania (ICW ACTS Mapping, 2006) Salamander Trust Associates, www.salamandertrust.net

12. Missing doses: a direct consequence of VAW • ‘I started taking medication in 2006. My husband does not know. I take the medicine out of a bottle and put it in a plastic bag or in a paracetamol box... Sometimes I would miss a dose; he comes back at 18.00hrs, drunk, closes the door and says, “Today you are going to freak out.” He locks me in, he beats me up and locks me out of the house... I go to the neighbours, if they have mercy they will let me in, if not, I sleep under a tree until tomorrow. As a result of that I miss doses sometimes. I feel very bad. I don’t even feel like taking the medicine.” Berta K., Lusaka, 2007 (Human Rights Watch, 2007) • Displaced and mobile populations are faced with uncertainty over stable accommodation, clean water and nutritional requirements for adhering to some HIV medication. Salamander Trust Associates, www.salamandertrust.net

13. Dealing with ARV side-effects • “When I started the medication, I had bad side-effects. I had to tell my husband that it was malaria.” Marietta M. (Human Rights Watch, 2007) Salamander Trust Associates, www.salamandertrust.net

14. Sites of HIV care, treatment and support can also be sites of VAW Institutional and structural violence and abuse: • Medical staff may refuse to touch or treat because of HIV status (Mea, 2009). • Medical attention for HIV positive women may be made contingent (on for example, forced contraception, abortion, sterilisation). • Pregnant women who are not willing to be tested for HIV, or who test positive for HIV, may be denied antenatal services (Welbourn, 2008, p. 15). • Injectable contraception as a condition for receiving HIV treatment (Stevens, 2008; de Bruyn, 2006). Salamander Trust Associates, www.salamandertrust.net

15. Forced and coerced sterilisation and abortion • Mounting evidence of HIV positive women undergoing forced or coerced sterilisation and/or termination of pregnancy, including evidence from Namibia, Thailand, Chile (Paxton et al, 2002, Gatsi, 2008). • Conversely, refusal to perform sterilisation and abortions on HIV positive women who request them constitutes another form of VAW (ICW, 2009) (as does criminalisation of abortion). Salamander Trust Associates, www.salamandertrust.net

16. Institutional and structural issues • A South African study found that women and girls with disabilities are particularly vulnerable to sexual abuse and HIV, yet for disabled women, enormous gaps in service delivery and access to sexual education, prevention and treatment of HIV persist (Hanass-Hancock, 2009). • Particular issues for married women (eg non-criminalisation of marital rape), young women, lesbian women... Salamander Trust Associates, www.salamandertrust.net

17. Legal and policy issues Legal provisions do nothing to mitigate against VAW in the context of HIV ACTS, and can themselves be seen as another form of VAW, for example: • Criminalisation of HIV transmission, including MTCT. • Criminalisation of sex work. • Criminalisation of drug use. • Laws relating to migrants, refugees and asylum seekers, including legal provision for access to healthcare, the ‘right to remain’, right to work, right to housing etc • Property and inheritance laws. • Etc etc Salamander Trust Associates, www.salamandertrust.net

18. Social and policy issues • Routine antenatal testing. • Male circumcision: impact on VAW in context of HIV. • Traditional practices such as: male doctors in Swaziland being traditionally barred from touching widows for two years (ICW ACTS Mapping, 2006). • There is very little legal or social protection for women, and it is often impossible and sometimes life-threatening for women to try to claim their rights. Salamander Trust Associates, www.salamandertrust.net

19. Conclusion • VAW does not stop at the stage of vulnerability to HIV. It is a reality for women diagnosed HIV positive, and has a serious impact on their ability to access HIV care, treatment and support, and to adhere to anti-retroviral treatment. • Partner violence is part of the story. The fear of violence, and institutional, structural, financial and legal violence also impedes women’s ACTS. • Universal access to treatment targets will not be met without addressing VAW. Salamander Trust Associates, www.salamandertrust.net

20. Acknowledgements • Human Rights Watch (2007) Hidden in the Mealie Meal. Gender-Based Abuses and Women's HIV Treatment in Zambia • Welbourn, A. (2008) ‘Into the firing line: placing young women and girls at greater risk’, African Legal Quarterly, September/November edition. • Maura Mea (2009) ‘PNG, pregnancy, maternity and the health professions’, Sophia Forum Newsletter 3, see www.sophiaforum.net/resources/SophiaNewsletter3Sept2009.pdf • Paxton, S. and Welbourn, A., with KousalyaPeriasamy, AnandiYuvaraj, SapanaPradhanMallaand MotokoSeko(2002) ‘Oh This One is Infected: Women. HIV and Human Rights in the Asia-Pacific Region’ • Lichtenstein (2006) ‘Domestic violence in barriers to health care for HIV-positive women’, Aids Patient Care and STDs, 20 (2), pp. 122-132. • Gatsi, J (2008) ‘Denying us the right to reproduce: Forced and coerced sterilisation of HIV positive women’, African Legal Quarterly, September/November edition. • Stevens, M. (2008) From HIV prevention to reproductive health choices: HIV/AIDS treatment guidelines for women of reproductive age, AJAR-African Journal of AIDS Research, 7 (3), pp. 353-359 2008. • de Bruyn, M. (2006) ‘Women, Reproductive Rights, and HIV/AIDS: Issues on Which Research and Interventions are Still Needed’, Journal of Health, Population and Nutrition, 24 ( 4), pp. 413 – 425. • ICW (2009) ‘HIV positive women’s experiences of abortion services in Nepal and India - Interviews with HIV positive women and other key informants’, see www.icw.org • Bell, E., Mthembu, P., O’Sullivan, S. and Moody, K. (2007) ‘Sexual and reproductive health services and HIV testing: perspectives and experiences of women and men living with HIV and AIDS;, reproductive Health Matters, 15 (9), pp. 113-135. • Hanass-Hancock (2009) ‘Interweaving Conceptualizations of Gender and Disability in the Context of Vulnerability to HIV/AIDS in KwaZulu-Natal, South Africa’, Sexuality and Disability, 27 (1), pp. 35-47 2009 • ICW (2006) ‘ACTS Mapping’, Tanzania, Namibia, Kenya, see www.icw.org With thanks to Alice Welbourn, Luisa Orza and Emma Bell. Salamander Trust Associates, www.salamandertrust.net